“No one, autistic or not, has high quality of life if their life goals are primarily set by others. Thus, quality of life should not be measured by a standard set of outcomes judged to be important by researchers, clinicians or policymakers. Instead, the goals of each person’s varied human life should be at least partly set by the person themselves.”Pellicano et al., 2022, Nature Reviews Psychology, Volume 1, pages 624–639
What does it mean to have a good quality of life? All programs at Emory Autism Center ask this question as the starting point of our work. We were excited to read a recent report titled “A capabilities approach to understanding and supporting autistic adulthood,” written by a multinational team of mixed autistic and non-autistic researchers led by Dr. Liz Pellicano in Australia. One important idea described in this research is how challenges that arise from autism biological characteristics can be compounded by a social model of disability that assumes that to be different is to be less capable. I recently heard of a young adult autistic software engineer employed in an internship with a local company. The job initially went well: the intern was good at the work and got along well with his manager, who understood that company rules supplied an important level of certainty about expectations that helped the intern navigate the complex work environment. But a new manager didn’t always follow the company rules, which was upsetting for the intern; he complained, and the manager spoke back harshly. The intern had a shutdown and was told by the company that they were letting him go.
This story happily has a good ending: the intern had a job coach who investigated and spoke with the company who agreed that their manager was at fault for breaking rules and for not listening properly to their employees. The manager was given extra training, and last I heard the intern was doing well again. Yet similar stories of neurotypical people overlooking the needs of autistic people are unfortunately common.
Dr. Pellicano and her team have made a compelling case for the need to better understand and appreciate the “capabilities in which autistic people have the potential to excel despite conventional stereotypes to the contrary,” as well as the challenges that autistic adults face in everyday life due to friction between personal circumstances and societal expectations. Working together better means welcoming and respecting the points of view of autistic people themselves. Emory Autism Center is committed to increasing understanding amongst people regardless of their neuroperspective. We encourage and support autistic people in the pursuit of their own capabilities and obstacles in pursuit of self-directed meaningful and successful lives.